After Ashley: Covering Children with Severe Disabilities

The beginning of 2007 brought a new face to our TVs, computers and print media: Ashley. The 9-year-old who will never grow up.

Ashley is developmentally and physically disabled. She has static encephalopathy [PDF], a condition that is the result of severe brain damage that will not improve. At her parents’ request, doctors removed her uterus and breast tissue and gave her hormones to keep her small. Her parents say she will be easier to care for that way.

As coverage continued, the debate grew fiercer and the sides more polarized with this basic question: Was it right to stunt her growth?

But now the flurry of coverage has slowed. So I wondered — how can journalists use what’s been said to broaden the discussion about children with disabilities like Ashley’s? What follow-ups could be written? How do we dig deeper than Ashley?

In the following Q&A, Caplan shares what he thinks journalists have been missing and where to go from here.How do we go beyond what’s already been covered about Ashley?

I think Ashley’s an interesting case. The policy questions are some of the things we need to be focused on, not just the odd or freakish nature of, “Is it right to keep somebody small?”

Is what’s right for this family right for other families? What’s the context? Is this a trend or just the weird, odd story of the week?

Families often can’t get any home-care aid, but they wouldn’t send their kid to a horrible institution. So a journalist could just ask around locally, what’s going on?

What might be causing the lack of home-care help for those with severely disabled kids? Is it a lack of money, lack of resources, lack of knowledge about how to access resources, or what? What needs to be done so that these families do get more assistance?

And what happens to kids like Ashley if their parents abandon them or when the parents are too old to be able to care for them?

Journalism is attracted to wonderful stories and human interest, and that’s what the Ashley story has. But it shouldn’t be just that. Your second-day story should be these policy stories. Otherwise, there’s a risk of turning the Ashley case into a kind of voyeurism.

What else hasn’t been covered?

This is a good example where there’s all kinds of voices that haven’t been heard from yet.

There are various disability groups that have positions on what was done to Ashley. Most of them don’t like it — independent-living groups, disability organizations … I haven’t seen many voices from the disabled community on this case.

All kinds of professional societies — not the same as the patient-advocacy groups — they’re people who are going to make a living studying something as opposed to having that condition. I didn’t see much from them. What does the AMA (American Medical Association) think or NAMI (National Alliance on Mental Illness) about all this?

Then there are different caregiver groups, some of which deal with severely disabled children or elderly patients — people who’ve had strokes or aneurysms. It’d be interesting to hear what they have to say.

Another issue that did not get much attention: What’s the simplest way to keep somebody small?

Just don’t feed them as much. Caloric restriction is a way a lot of people have dealt with the problem Ashley’s facing. Then there’s a fine line between keeping people well nourished and starving them.

I haven’t seen one word about caloric restriction, which means journalists haven’t been digging that deep.

So that tells me that when people run into these kinds of stories, they tend to be completely dominated by the people who are blogging and by the charms or failings of the particular family. But there’s not a lot of context given in that kind of coverage: Have other families dealt with this? What do disabled people think about this? What do doctors and experts think about this? What is the cheapest place to care for an Ashley? What if the parents abuse her if she is at home — will anyone know? So it’s been a very narrow slice on the Ashley case.

There’s also some other things that’ve been said. The parents want to keep her home. Keep her home from what? An institution? What I’m getting at there is, are institutions for kids like Ashley horrible? Wonderful? Fine? Cesspools? Snake pits? You know, what are they? Do they vary from state to state?

It’s a hard question to ask, but it’s one a good, enterprising journalist would ask: Is it better to keep her at home? And what are the institutional options that are out there? What’s out there for taking care of severely disabled kids like Ashley?

What’s at cost? Do we want someone like Ashley to stay home because it’ll cost the rest of us a whole lot of money? Is it cheaper if her parents are willing to take this on? What’s the financial side of all that anyway? I haven’t seen anybody raise one word about money.

Conversely, or related to this, when the parents of kids like Ashley [die], who takes care of them then? Does it matter if they’re smaller? In other words, there’s another issue out here. Are these kids going to be just kept small while their parents are there? But what happens to them when their parents are gone? What happens to them?

The parents, one of the things they said, they didn’t want her to have breasts. How often are people who are in institutions attacked? If it is the case, that might be worth a little investigative story — is it right to worry about it? Is it really the case that patients are assaulted by their caregivers? Do they screen people for sexual crimes?

So future coverage ideas:

Look into the status of home care and institutional care for the severely disabled.

Look into the financial burdens families face who try to care for a child at home.

Look at the impact of having a severely disabled child on marriages and on siblings.

What do you think of the coverage so far? What’s been done well? What needs work?

I think the core debate over her has been well-covered — the pros and cons. We got both sides of the ethics of the procedure. I think people have a good idea of why the parents did what they did. I think their story has been told pretty well. I don’t think it’s entirely clear what was done to her — with hormones and things. It’s not that journalists didn’t try, it’s just you really gotta stay with that one.

I think the coverage was also pretty good of the thoughtfulness of the parents. Journalists acknowledged it was hard for them to present and were sympathetic to that idea that it’s tough to tell your personal story of life with a disabled kid. But they might have ignored that question of what’s the best place for a severely disabled kid to be. That’s the tougher question to ask.

How do you cover the complexities of a story like this one while still making the information understandable?

I don’t think that’s so hard here. I think people get it. Here you’re asking about institutional care — what do other people who are disabled think about it. I don’t think this is a technical thing.

How does running photos and videos of Ashley and her family affect the story and readers’ reactions to it?

It generates enormous sympathy. It’s skewing the case that way. Anytime you’ve got picture access of the little girl, people are going to identify with that little girl — more sympathy for the idea of keeping Ashley small. She looks cute, she’s appealing.

I think you have to [compensate] for that in the text — making those who hate what was done to her heard. That’s the balance that wasn’t made. Not people who are caregivers — real people with disabilities. Most of them don’t agree with what they did to Ashley, just looking at e-mails from my columns.

I got a fair number of people who don’t like what’s going on with her, and they tended to be disabled. People who supported the family tended to be parents. It was strongly divided that way.

They certainly made a difference on the story. There’s a huge amount of blogging going on. But more than other stories, I don’t know. They have a very big impact to drawing attention to the story, and seeing people debate it. It got a lot of people to vent their opinions … and a lot of positive impact. Just people talking back and forth on what they thought.

I think most people got their facts out of the news, then they just used the blogs to vent an opinion. I don’t think they learned about it from blogs.

How can journalists avoid exploiting or giving the appearance of exploiting someone like Ashley — a developmentally and physically disabled child?

She’s completely incompetent. You really can’t get away from some element of exploitation. That’s just going to be a part of that story. A 9-year-old, severely disabled girl who can’t give permission … there’s no other way to get around it. You start talking about getting more pictures, more balance, but no, I think you’re just stuck. You’re going to take advantage of her, and that’s just how it is. And I don’t think people were put off by it. I think people were pretty tasteful and respectful about writing about it.

What advice do you have for journalists covering a story like Ashley’s who have a strong opinion about it?

Drop the strong opinion. This is a very complicated issue, and you cannot bring any ethical or ideological baggage to it.

You’ve written a column for MSNBC.com about Ashley, saying that you do not agree with her parents’ decision to prevent her from growing. To what extent would you encourage other journalists who might not have your bioethical background to also write opinion pieces?

I would encourage them. Once they learn about the story, they can surely make sound arguments pro or con, and this is a subject that is so new that it can greatly benefit from debate.

Where can journalists covering Ashley and related stories turn for resources?

Lots of places, but a good start are children’s hospitals, state departments of disability, parent groups at public schools, and clergy who may have counseled families with severely disabled kids.

Taking a step back to bioethics in general, what issues do you see brewing for 2007 that journalists should be aware of and plan ahead for?

Watch out for the possibility of another face transplant this year. And keep an eye on avian flu — that story will be coming back again.

Editor’s Note: These responses were gathered from phone and e-mail interviews and edited for clarity.